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HAL Id: hal-01393731

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Kathrin Woitha, Karen van Beek, Nisar Ahmed, Jeroen Hasselaar, Jean-Marc

Mollard, Isabelle Colombet, Lukas Radbruch, Kris Vissers, Yvonne Engels

To cite this version:

Kathrin Woitha, Karen van Beek, Nisar Ahmed, Jeroen Hasselaar, Jean-Marc Mollard, et al..

Devel-opment of a set of process and structure indicators for palliative care: the Europall project. BMC

Health Services Research, BioMed Central, 2012, 12, �10.1186/1472-6963-12-381�. �hal-01393731�

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R E S E A R C H A R T I C L E

Open Access

Development of a set of process and structure

indicators for palliative care: the Europall project

Kathrin Woitha

1*

, Karen Van Beek

2

, Nisar Ahmed

3

, Jeroen Hasselaar

1

, Jean-Marc Mollard

5

, Isabelle Colombet

6,7

,

Lukas Radbruch

4

, Kris Vissers

1

and Yvonne Engels

1

Abstract

Background: By measuring the quality of the organisation of palliative care with process and structure quality

indicators (QIs), patients, caregivers and policy makers are able to monitor to what extent recommendations are

met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of

public programmes, and will enable comparisons between organisations or countries.

Methods: As no European set of indicators for the organisation of palliative care existed, such a set of QIs was

developed. An update of a previous systematic review was made and extended with more databases and grey

literature. In two project meetings with practitioners and experts in palliative care the development process of a QI

set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council

of Europe.

Results: The searches resulted in 151 structure and process indicators, which were discussed in steering group

meetings. Of those QIs, 110 were eligible for the final framework.

Conclusions: We developed the first set of QIs for the organisation of palliative care. This article is the first step in a

multi step project to identify, validate and pilot QIs.

Keywords: Quality indicator, Organisation, Europe, Public health, Palliative care, Europall

Background

Following the 2002 definition of the World Health

Organisation (WHO), palliative care is no longer restricted

to patients with cancer; it should be available for all

patients with life-threatening diseases [1]. Furthermore,

palliative care is applicable early in the course of the disease

and can be delivered in conjunction with interventions that

aim to prolong life. Palliative care needs a team approach

in order to relieve not only pain and other somatic

symp-toms but also to provide multi-dimensional care including

psychosocial and spiritual care and support for patients

and their proxies. This wider definition implies an increase

of the number of patients eligible for palliative care. Due

to successful medical interventions, the aging population

and improved survival of patients with chronic diseases or

with cancer, the demand for palliative care will increase

too [2,3].

In 2003, the Council of Europe launched

recommen-dations for the organisation of palliative care regarding

settings and services, policy and organisation, quality

improvement and research, education and training,

fam-ily, communication with the patient and famfam-ily, teams

and bereavement. This included further cooperation

be-tween European countries [4]. As most scientific studies

focus on clinical outcomes, it is unclear whether these

recommendations and the WHO definition have been

implemented in the organisation of palliative care in

Europe. By measuring the quality of the organisation of

palliative care, patients, caregivers and policy makers

can monitor whether in their country, specific settings

and networks for palliative care meet the

recommenda-tions of the council of Europe and of the WHO. This

information would give better insight, which is needed

for the measurement of the impact of palliative care

pro-grams [5].

* Correspondence:k.woitha@anes.umcn.nl

1Department of Anaesthesiology, Pain and Palliative Medicine, Radboud

University Nijmegen Medical Centre, Geert Grote Plein 10, Nijmegen 6500 HB, The Netherlands

Full list of author information is available at the end of the article

© 2012 Woitha et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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A valid and reliable method for assessing the quality of

the organisation of care is the use of structure and

process quality indicators (QIs). QIs are

‘explicitly

defined and measurable items referring to the outcomes,

processes or structure of care’ [6,7]. In a systematic

review published in 2009, clinical indicators appeared to

be widely overrepresented over indicators that assess

organisational issues of palliative care, and most QIs were

developed in and for one specific country or setting [8].

Therefore, we aimed to develop a scientifically sound

European set of structure and process QIs, as a first step

in quality measurement and improvement.

Methods

The study, undertaken by partners from seven collaborating

countries (Belgium, United Kingdom, France, Germany,

Netherlands, Poland and Spain), ran from October 2007 till

September 2010 [9]. It was co-funded by the European

Executive Agency for Health and Consumers (EAHC).

QI sets can be based on existing sets of QIs,

recom-mendations from clinical guidelines, scientific literature,

best practice or expert consensus [6]. We used a

com-bination of these.

As palliative care, being a relatively young field within

health care is changing rapidly. The initial phase of this

project was an update and extension of a previous

review aiming to find already existing QIs in literature

or aspects of the organisation of the palliative care for

which QIs would be useful [8]. QIs were operationalized

as

‘measurable items referring to the outcomes,

pro-cesses or structure of care’ [6,7]. Organisation of

pallia-tive care was defined as

‘systems to enable the delivery

of good quality in palliative care’, which made us focus

on processes and structures [7]. Besides publications that

describe the development or use of QIs for the

organisa-tion of palliative care, publicaorganisa-tions were used that

describe the structure or process of good palliative care,

in order to develop QIs if not available yet.

Main database search

As an update and extension of an existing systematic

re-view, the following bibliographic databases were searched:

Medline, Scopus, PsycINFO, Social Medicine, CINAHL,

the Cochrane Database, Embase, SIGLE, ASCO, and

Google Scholar by an existing search strategy (Additional

file 1: Appendix A) [8]. If applicable, Mesh terms were

changed, as these are database-specific.

Inclusion criteria were a publication period from

December 2007 to May 2009, as the systematic review

ran until December 2007 and containing information

about the development or use of (sets of ) QIs.

Papers describing QIs about palliative care for

chil-dren, clinical outcome indicators, patient outcome and

on treatment were excluded, as well as scientific papers

that were not written in English.

The initial selection process was based on independent

screening by three researchers of title and/or abstract,

followed by a selection based on full text. Additionally,

reference lists of obtained papers were studied and hand

searches were performed (Current Opinion in Supportive

and Palliative Care, Journal of Pain and Symptom

Management, Palliative Medicine and Quality and

Safety in Health Care Journal).

The QIs derived from the search were categorized in a

framework. It was based on (1) a previously developed

framework for evalution of the organisation of general

practice and adapted for palliative care and (2) the

recommendations of the Council of Europe [4,10]. It

contains the domains 1. Definition of a palliative care

service, 2. Access to palliative care, 3. Infrastructure, 4.

Assessment tools, 5. Personnel, 6. Documentation of

clinical data, 7. Quality and safety issues, 8. Reporting

clinical activity of palliative care, 9. Research and 10.

Eduation.

Grey literature search

If a domain or subdomain of the framework was not

cov-ered with QIs found in the literature search, an additional

grey literature search was performed. Grey literature was

defined as

‘literature which has not been formally

pub-lished in peer- reviewed literature’ [11]. Inclusion of

grey literature was restricted to reports from government

agencies or scientific research groups, white papers and

websites from national organisations of the seven

partici-pating countries. Finally, the network of the Europall

research group was used to identify relevant papers.

Methods of screening and article selection

The steering group of the Europall project planned two

meetings in September and October 2009 with all project

members (Additional file 1: Appendix B).

QI selection

The draft set of structure and process QIs was discussed

during the first steering group meeting in September

2009. Academic experts from several disciplines in

palliative care, all from one of the seven participating

European countries were invited. Consensus was based

on 1. whether it considered a process or structure QI

2. whether it overlapped with other proposed QIs, 3. to

which domain of the framework (Table 1) it belonged

[10] and 4. for which settings it was applicable. Based

on the grey literature search, the project partners could

suggest new QIs about aspects that were relevant but

not yet operationalised as QIs.

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Table 1 Quality indicator set

Definition of a palliative care service 1 All the services below are part of a comprehensive palliative care service: Palliative day care,

Palliative home care support team, Hospice beds, Palliative hospital support team, Inpatient palliative care hospital beds, Palliative care outpatient clinic, Bereavement support

Structure indicator

All settings New developed 2 All the services below are part of a comprehensive palliative care service: Palliative day care Structure

indicator

All settings New developed 3 All the services below are part of a comprehensive palliative care service: Palliative home care

support team

Structure indicator

All settings New developed 4 All the services below are part of a comprehensive palliative care service: Hospice beds Structure

indicator

All settings New developed 5 All the services below are part of a comprehensive palliative care service: Palliative hospital

support team

Structure indicator

All settings New developed 6 All the services below are part of a comprehensive palliative care service: Inpatient palliative care

hospital beds (e.g. palliative care unit)

Structure indicator

All settings New developed 7 All the services below are part of a comprehensive palliative care service: Palliative care

outpatient clinic

Structure indicator

All settings New developed 8 All the services below are part of a comprehensive palliative care service: Bereavement support Structure

indicator

All settings New developed Access to palliative care

A. Access and availability (All settings) 9 A palliative care team is available at the request of the treating professional/team in all of the

following settings: Day care, at home, Hospital, Hospice, Nursing home, Outpatient clinic, Day care

Process indicator

All settings New developed 10 A palliative care team is available at the request of the treating professional/team in all of the

following settings: Day care (excluding palliative day care)

Process indicator

All settings New developed 11 A palliative care team is available at the request of the treating professional/team in all of the

following settings: At home (or home replacing institution s.a mental institution, prison)

Process indicator

All settings New developed 12 A palliative care team is available at the request of the treating professional/team in all of the

following settings: Hospital

Process indicator

All settings New developed 13 A palliative care team is available at the request of the treating professional/team in all of the

following settings: Hospice

Process indicator

All settings New developed 14 A palliative care team is available at the request of the treating professional/team in all of the

following settings: Care home

Process indicator

All settings New developed 15 A palliative care team is available at the request of the treating professional/team in all of the

following settings: Outpatient clinic (excluding palliative care outpatient clinic)

Process indicator

All settings New developed 16 For every professional/team specialised palliative care advice is available 24 hours a day, 7 days

a week

Process indicator

All settings Changed 17 Patients in need of palliative care and their families have access to palliative care facilities:

Throughout the entire duration of their disease

Process indicator

All settings Changed 18 Patients in need of palliative care and their families have access to palliative care facilities: With

no extra financial consequences for the patient

Process indicator

All settings Changed 19 Patients receiving palliative care have access to diagnostic investigations (e.g. X-rays, blood

samples) regardless of their setting

Process indicator

All settings Changed Primary care (Home, Nursing home)

20 Palliative care is available for the patient and their family by:Phone Process indicator

Primary care indicator

Changed 21 Palliative care is available for the patient and their family by: Visiting the patient Process

indicator

Primary care indicator

Changed 22 Palliative care is available for the patient and their family by: Bringing the patient to the service Process

indicator

Primary care indicator

Changed 23 For a palliative patient in a crisis, the following can be arranged within 24 hours: Admission Process

indicator

Primary care indicator

Changed 24 For a palliative patient in a crisis, the following can be arranged within 24 hours: An urgent

discharge to patients home

Process indicator

Primary care indicator

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Table 1 Quality indicator set (Continued)

25 For a palliative patient in a crisis, the following can be arranged within 24 hours: Transfer to another setting of care

Process indicator

Primary care indicator

Changed B. Out of hours (All settings)

Staff

26 A member of a palliative care team is available 24 hours a day, 7 days a week: For palliative care consultation by phone

Process indicator

All settings Changed 27 A member of a palliative care team is available 24 hours a day, 7 days a week: To provide

bedside care in a crisis

Process indicator

All settings Changed Drugs

28 The following treatments are available for a palliative patient 24 hours a day, 7 days a week: Opioids and other controlled drugs

Structure indicator Primary care indicator Combined/ Changed 29 The following treatments are available for a palliative patient 24 hours a day, 7 days a week:

Anticipatory medication for the dying patient

Structure indicator Primary care indicator Combined/ Changed 30 The following treatments are available for a palliative patient 24 hours a day, 7 days a week:

Syringe drivers Structure indicator Primary care indicator Combined/ Changed C. Continuity of care (All settings)

31 There is a procedure for exchange of clinical information across caregivers, disciplines and settings

Process indicator

All settings Changed 32 Before discharge/transfer/admission there is information transfer to the caregivers in the next

setting regarding care and treatment

Process indicator

All settings Changed 33 There is a professional caregiver per individual palliative patient nominated as responsible‘key

worker‘ who coordinates care

Process indicator

All settings Combined/ Changed 34 The responsible‘key worker‘ pays special attention to continuity of care within and across

settings

Process indicator

All settings Combined/ Changed Inpatient setting (Hospital, Palliative care unit, Hospice)

35 General practitioners (GP‘s) are routinely called when a patient is being discharged home or transferred to another setting

Process indicator

Inpatient setting indicator

Changed 36 The discharge/transfer letter of palliative care patients contains a multidimensional diagnosis,

prognosis and treatment plan (see indicator 48 Clinical record )

Structure indicator Inpatient setting indicator Changed Primary care

37 The primary care out-of-hours service has handover forms (written or -electronic) with clinical information of all palliative care patients in the terminal phase at home

Structure indicator Primary care indicator Changed Infrastructure A. All settings Infrastructure

38 Specialist equipment (e.g. anti decubitus mattresses, aspiration material, stoma care, oxygen delivery, special drug administration pumps, hospital beds, etc.) is available for the nursing care of palliative care patients in each specific setting

Structure indicator

All settings Changed 39 There is a dedicated room where multidisciplinary team meetings within one setting takes place Structure

indicator

All settings New developed 40 There are dedicated facilities for multidisciplinary communications across settings: A dedicated

room for meetings

Structure indicator

All settings Changed 41 There are dedicated facilities for multidisciplinary communications across settings: Facilities for

video or telephone conferences

Structure indicator

All settings Changed Information about care

42 There is an up to date directory of local caregivers and organisations that can have a role in palliative care

Structure indicator

All settings New developed 43 There are dedicated information about the palliative care service: A website Structure

indicator

All settings Changed 44 There are dedicated information about the palliative care service: Leaflets or brochures Structure

indicator

All settings Changed 45 Patient information should be available in relevant foreign languages Structure

indicator

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Table 1 Quality indicator set (Continued)

46 Appropriately trained translators should be available if professional caregivers and patient or family members do not speak the same language

Process indicator

All settings Changed 47 There is a computerised medical record, to which all professional caregivers involved in the care

of palliative care patients have access: Within one setting

Process indicator

All settings Combined IT systems

48 There is a computerised medical record, to which all professional caregivers involved in the care of palliative care patients have access: Across different settings

Process indicator

All settings Combined B. Inpatient setting (Hospital, Palliative care unit, Hospice, Nursing home)

49 Consultations with the patient and/or family/informal caregivers are done in an environment where privacy is guaranteed (e.g. there is a dedicated room)

Structure indicator

Inpatient setting indicator

Changed 50 Dying patients are able to have a single bedroom if they want to Process

indicator

Inpatient setting indicator

New developed 51 There are facilities for a relative to stay overnight Structure

indicator

Inpatient setting indicator

New developed 52 Family members and friends are able to visit the dying patient without restrictions of visiting

hours Process indicator Inpatient setting indicator Changed 53 There is a private place (e.g. dedicated room) for saying goodbye to the deceased Structure

indicator Inpatient setting indicator New developed C. Home care

54 For a palliative care patient staying at home there is the possibility, if needed, to provide someone (a volunteer or professional) to stay overnight if needed

Process indicator Home care indicator Changed Assessment tools

55 There is a holistic assessment of palliative care needs of patients and their family caregivers (e.g. SPARC)

Process indicator

All settings Changed 56 There is an assessment of pain and other symptoms using a validated instrument Process

indicator

All settings Changed Personnel palliative care services

A. Staff

57 The multidisciplinary team that provides palliative care consists of at least one of the following disciplines: Physician

Structure indicator

All settings Changed 58 The multidisciplinary team that provides palliative care consists of at least one of the following

disciplines: Nurse

Structure indicator

All settings Changed 59 The multidisciplinary team that provides palliative care consists of at least one of the following

disciplines: Spiritual/religious caregiver

Structure indicator

All settings Changed 60 The multidisciplinary team that provides palliative care consists of at least one of the following

disciplines: Psychologist/Psychiatrist

Structure indicator

All settings Changed 61 The multidisciplinary team that provides palliative care consists of at least one of the following

disciplines: Social worker

Structure indicator

All settings Changed 62 The multidisciplinary team that provides palliative care consists of at least one of the following

disciplines: Physiotherapist

Structure indicator

All settings Changed 63 The multidisciplinary team that provides palliative care consists of at least one of the following

disciplines: Occupational therapist

Structure indicator

All settings Changed 64 The multidisciplinary team that provides palliative care consists of at least one of the following

disciplines: Dietitian

Structure indicator

All settings Changed 65 The multidisciplinary team that provides palliative care consists of at least one of the following

disciplines: Bereavement counselor

Structure indicator

All settings Changed 66 The multidisciplinary team that provides palliative care consists of at least one of the following

disciplines: Pharmacist

Structure indicator

All settings Changed B. Education and training for staff/volunteers

67 New staff receives a standardised induction training Process indicator

All settings Changed 68 All team members have certified (accredited?) training in palliative care, appropriate to their

discipline

Process indicator

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Table 1 Quality indicator set (Continued)

69 All volunteers have training in palliative care. Process indicator

All settings Combined/ Changed C. Support systems

70 All team members have an annual appraisal Process indicator

All settings Changed 71 All team members who professionally deal with loss have access to a program for care for the

carers

Process indicator

All settings Changed 72 Satisfaction with working in the team is assessed (e.g. Team Climate Inventory) Process

indicator

All settings Changed D. Organisation of care

73 Palliative care services work in conjunction with the referring professional/team Process indicator

Inpatient setting indicator

New developed 74 There is a regular interdisciplinary/multi-professional meeting to discuss palliative care patients:

daily meetings to discuss day-to- day management of palliative care patients

Process indicator

All settings Combined/ Changed 75 There is a regular interdisciplinary/multi-professional meeting to discuss palliative care patients:

weekly (inter- and multidisciplinary) meeting to review palliative care patients referrals and care plans

Process indicator

All settings Combined/ Changed E. Information sharing

76 All relevant team members are informed about patients who have died Process indicator

Inpatient setting indicator

Changed Documentation of clinical data

A. Clinical record (All settings)

77 For patients receiving palliative care a structured palliative care clinical record is used Process indicator

All settings Changed 78 The palliative care clinical record contains evidence of documentation of the following items:

Clinical summary

Process indicator

All settings Changed 79 The palliative care clinical record contains evidence of documentation of the following items:

Physical aspects of care

Process indicator

All settings Changed 80 The palliative care clinical record contains evidence of documentation of the following items:

Psychological and psychiatric aspects of care

Process indicator

All settings Changed 81 The palliative care clinical record contains evidence of documentation of the following items:

Social aspects of care

Process indicator

All settings Changed 82 The palliative care clinical record contains evidence of documentation of the following items:

Spiritual, religious, existential aspects of care

Process indicator

All settings Changed 83 The palliative care clinical record contains evidence of documentation of the following items:

Cultural aspects of care

Process indicator

All settings Changed 84 The palliative care clinical record contains evidence of documentation of the following items:

Care of imminently dying patient

Process indicator

All settings Changed 85 The palliative care clinical record contains evidence of documentation of the following items:

Ethical, legal aspects of care

Process indicator

All settings Changed 86 The palliative care clinical record contains evidence of documentation of the following items:

Multidimensional treatment plan

Process indicator

All settings Changed 87 The palliative care clinical record contains evidence of documentation of the following items:

Follow up assessment

Process indicator

All settings Changed B. Timely documentation

Inpatient setting (Hospital, Palliative care unit, Hospice, Nursing home) 88 Within 24 hours of admission there is documentation of the initial assessment of: Prognosis,

Functional status, Pain and other symptoms, Psychosocial symptoms, The patient‘s capacity to make decisions Process indicator Inpatient setting indicator Changed 89 There is documentation that patients reporting pain or other symptoms at the time of

admission, had their pain or other symptoms relieved or reduced to a level of their satisfaction within 48 hours of admission

Process indicator

Inpatient setting indicator

Changed 90 There is documentation about the discussion of patient preferences within 48 hours of

admission Process indicator Inpatient setting indicator Changed

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Table 1 Quality indicator set (Continued)

91 A discharge/transfer summary is available in the medical record within 48 hours after discharge/ transfer Process indicator Inpatient setting indicator Changed All settings

92 There is documentation of pain assessment at 4 hour intervals Process indicator

All settings Changed 93 The discussion of patient‘s preferences is reviewed on a regular basis (in parallel with disease

progression) or on request of the patient

Process indicator

All settings Changed 94 There is documentation that within 24 hours after patient transfer, the responsible physician in

the receiving setting has visited the patient

Process indicator

All settings Changed 95 There is documentation that within 24 hours after patient transfer, the new palliative care team

in the receiving setting has visited the patient

Process indicator

All settings Changed Quality and safety issues

A. Quality policies

96 The palliative care service has a quality improvement program Process indicator

All settings Changed 97 There is documentation whether targets set for quality improvement have been met Process

indicator

All settings Changed 98 Clinical audit are part of the quality improvement program Process

indicator

All settings Changed 99 The setting uses a program about early initiation of palliative care (e.g. the Gold Standards

Framework)

Process indicator

All settings Changed B. Adverse events

100 There is a register for adverse events Process indicator

All settings Changed 101 There is a documented procedure to analyse and follow up adverse events Process

indicator

All settings Changed C. Complaints procedure

102 There is a patient complaints procedure Process indicator

All settings Changed Reporting clinical activity of palliative care services

103 The palliative care service uses a database for recording clinical activity Process indicator

All settings Changed 104 The following is part of the database: Diagnosis, Date of diagnosis, Date of referral, Date of

admission to the palliative care service, Date of death, Place of death, Preferred place of death

Process indicator

All settings Changed 105 From the database the service is able to derive: Time from diagnosis to referral to palliative care,

Time from referral to initiation of palliative care, Time from initiation of palliative care to death, Frequency of unplanned consultations with the out-of-hours service for palliative care patients who are at home, Frequency of unplanned hospital admissions of palliative care patients, Percentage of non-oncological patients receiving palliative care

Process indicator

All settings New developed

106 Based on the database, an annual report is made about the service Process indicator

All settings Changed Research

107 There is evidence that the palliative care service is involved in research in palliative care (e.g. authorship of publications, research grants)

Process indicator

All settings Changed Education

108 All health and social care students have standardised learning objectives for basic training in palliative care

Process indicator

All settings Changed 109 All health and social care professionals have standardised learning objectives for continuing

basic training in palliative care

Process indicator

All settings New developed 110 There is a program for specialised training in palliative care for professionals working in a service

that provides specialised palliative care

Process indicator

All settings New developed

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3. Based on this meeting, adaptations were made and a

new draft QI set was presented in the second steering

group meeting in October.

Results

Search flow

The literature search resulted in 541 papers, including a

previous systematic review on quality indicators for

palliative care [8]. Most of the papers came from the

database search (n=527), followed by the hand search

(n= 29) and least of grey literature search (n=14).

In the screening process 16 duplicates were identified,

and titles and abstracts of 511 papers were searched. Of

these, 389 documents were excluded, as they did not

contain QIs. Full papers were obtained of 122

publica-tions, from which 63 papers were included; 57 resulting

from the database search [12-68] and another six papers

from the additional hand searches (Figure 1) [69-74].

Results grey literature search

The grey literature search yielded seven papers, deriving

from Belgium, the Netherlands and the UK [9,75-80].

These sources included government sites, national

health organisations and national institutes (Figure 1).

This additional search resulted in the development of 53

QIs, divided over almost all domains (see Additional file 1).

QI development

Sixhundred-thirtyfive QIs were derived from this literature

review. After screening of duplicates, selecting process

and structure QIs and combining QIs covering the same

topic, the remaining 151 QIs were organised in the

frame-work and discussed in the first steering group meeting.

The two steering group meetings resulted in a reduction

from 151 to 110 QIs (Additional file 1: Appendix C)

(Figure 2). For instance the domain about finance QIs was

excluded for the final set as the QIs were more useful on

national level than in the setting specific palliative care

institutions.

The rest of the QIs were distributed over the

frame-work (Table 1) [10].

The majority of the 110 QIs were process QIs (n=76),

the other structure QIs (n=34). Some of the QIs (n=24)

were only applicable in specific settings; ten in primary

care, thirteen in inpatient settings and one in home care.

The others were meant for all settings that deliver

pallia-tive care.

(10)

Twenty-four QIs were developed based on

organisa-tional aspects found in literature (Table 1, QI 51).

Finally, several QIs (n= 86), were changed in their

pres-entation of text during the procedure. For example,

originally developed QIs for other settings like the

inten-sive care unit, were adapted to make them appropriate

for palliative care settings.

Discussion

We were able to develop an international framework

with 110 QIs to assess the organisation of palliative care

in several kind of settings. To our knowledge, this study

presents the first systematically developed international

set of QIs on this topic. Part of the QIs are setting

spe-cific, whereas others will be applicable in all kind of

set-tings that deliver palliative care.

Where Pasman et al. performed a systematic review

on all kind of QIs for palliative care, and Pastrana et al.

focused on outcome indicators for Germany, we focused

on process and structure QIs [8,81]. By using an

international perspective and by not limiting the study

to symptom control, our study follows the

recommenda-tions of Ostgathe et al. [82]. Our set also contains two

QIs that are linked to the World Health Assembly’s

pro-posed global health indicator

‘Access to palliative care

assessed by morphine-equivalent consumption of strong

opioid analgesia (excluding methadone) per death by

cancer’, but without the restriction to patients with

can-cer [83].

Strength and limitations

We chose an approach with several consecutive

methodo-logical steps to develop a set of QIs. Of those aspects that

were considered important for the organisation of

pallia-tive care but of which no QIs could be found, we

devel-oped QIs ourselves [84]. Of those QIs that were develdevel-oped

for a restricted group of patients or setting (e.g. ICU or

vulnerable elderly) we checked whether we could rephrase

them into QIs for more types of settings or palliative

patients. Defining QIs in a consensus procedure is a good

(11)

option if scientific literature is not yet available [7],

par-ticularly because it combines several methods to improve

validity. Using a group approach has the advantage that

participants can share their expertise and experience.

Groups often make better decisions than individuals [85].

The naming of QIs as process or structure indicators

can be discussed. Yet, this only influences the

categorisa-tion and not the content, importance or use of a QI.

Another strong aspect of our procedure is the

inclu-sion of grey literature, which created the possibility to

include documents from important although not

scien-tific sources [86].

As the Europall project was a collaboration of seven

European countries, only experts of these countries

were represented in the steering group meetings. Other

European countries, with different health care and

fi-nancing systems, cultures and palliative care, were not

involved at this stage.

This first step resulted in a set of structure and

process QIs, that can help professionals or settings to

measure the quality of care of their setting. In a next

step, a subset will be developed of which each QI is

ap-plicable in the seven participating countries.

Based on a modified RAND Delphi method the

follow-ing set will be interestfollow-ing for international comparison.

The advantage of this comprehensive set enables each

country and each setting the opportunity to see all QIs

that are available on this topic.

The last step will describe a pilot study to test the set

of QIs on face-validity, applicability and discriminative

power. This includes almost all (26) European countries.

These studies will be published separately.

Further research

The final set can be used to provide feedback to settings or

countries to reflect on their performance, for supporting

quality improvement activities, accreditation, research, and

enhancing transparency about quality. They can be used to

evaluate the implementation of the WHO definition and

the recommendations of the council of Europe [1,4].

From 2011 to 2015, a follow-up project to Europall

called IMPACT (funded by the EU 7

th

framework) will

develop and test strategies to implement these QIs.

Conclusions

This review resulted in the first comprehensive

frame-work of QIs for the organisation of palliative care.

Additional file

Additional file 1: Supplementary online content. Development of a set of process and structure indicators for palliative care: the Europall

project. Appendix A- Search strategies for databases. Appendix B- Project partners. Appendix C- Indicators set for the organisation of palliative care. Competing interest

This work was partly funded by EAHC (Executive Agency for Health and Consumers, grant: 2006111 PPP‘Best practices in palliative care’). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. The authors have no financial disclosures. Authors' contributions

KvB participated in the literature search, design of the study and drafted the manuscript. NA participated in the literature search, design of the study and drafted the manuscript. JH participated in the literature search, design of the study and drafted the manuscript. JMM was actively involved in the selection and developmental process of the QI. She attended the expert meeting. IC was actively involved in the selection and developmental process of the QI. She attended the expert meeting. LR and helped to draft the manuscript and had an advisory role. KV conceived of the study and participated in its design and coordination and helped to draft the manuscript. YE conceived of the study and participated in its design and coordination and helped to draft the manuscript. All authors read and approved the final manuscript.

Acknowledgements

The authors are grateful to the EAHC (Executive Agency for Health and Consumers) for funding the Europall project. We would like to thank Hristina Mileva from EAHC specifically for her help and support. Further our thanks also go to the many individuals and organisations in the seven countries that contributed information to the project. We are especially grateful to all those who shared their views with us.

Belgium: Johan Menten

England: Sam Ahmedzai, Bill Noble France: Jean-Christophe Mino

Germany: Eberhard Klaschik, Birgit Jaspers Poland: Wojciech Leppert, Sylwia Dziegielewska

Spain: Xavier Gomez Batiste Alentorn, Silvia Paz, Marisa Martinez Munoz Author details

1Department of Anaesthesiology, Pain and Palliative Medicine, Radboud

University Nijmegen Medical Centre, Geert Grote Plein 10, Nijmegen 6500 HB, The Netherlands.2Department of Radiotherapy-Oncology and Palliative

Medicine, University Hospital Leuven, Leuven, Belgium.3Academic Unit of Supportive Care, School of Medicine and Biomedical Sciences, The University of Sheffield, Sykes House, Little Common Lane, Sheffield S11 9NE, UK.

4Department of Science and Research in Palliative Medicine, University of

Bonn, Malteser Hospital Bonn/Rhein-Sieg, Bonn, Germany.5Réseau de Santé, Paris Sud, France.6Université Paris Descartes, Sorbonne Paris Cité, Public

Health, Paris F-75006, France.7AP-HP, Cochin Teaching Hospital, Palliative Medicine, Paris F-75014, France.

Received: 20 October 2011 Accepted: 31 October 2012 Published: 2 November 2012

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doi:10.1186/1472-6963-12-381

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Figure

Table 1 Quality indicator set
Table 1 Quality indicator set (Continued)
Table 1 Quality indicator set (Continued)
Table 1 Quality indicator set (Continued)
+4

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